Ready to quit

[radgast1]

Hi,

I was diagnosed in December, and got my first mask about 2 months ago. I am still have no success in using it. I have leaks within the first hour of use. So I re-adjust, which just resets the clock and the hour starts all over again. I have yet to sleep at all with this thing on my face. I usually stuggle with it for the first hour, and then take it off so that I can get some sleep.

Support from the techs has been close to non-existent. They don't return calls. I talk to a different person every time, and so end up starting from scratch. They sent me a different model mask, which is only slightly better.

I am a stomach sleeper, and have been trying to sleep on my side with the device. And despite trying to stay as stationary as possible, still end up disrupting the device. I can't even imagine how many problems I would I have if I ever fell asleep with it on. At this point, I feel like trying to sleep with this is like trying to sleep standing on one leg. Eventually I guess you will get so tired that you will sleep that way, but then fall over and wake up again, so what's the point?

I feel that I am so far from this being a workable solution, that I can't ever envison this working for me. I am exhaused, frustrated, and don't know where to go from here.


John

[cflame1]

John,
So tell us what equipment are you on... exactly.

And make a decision that the treatment is for you, so you will decide to manage it yourself.

[napstress]

I'm sorry to hear of your struggles. I am new, too. I felt exactly like you did last week. This week I had a bit of a breakthrough. Hang in there. Keep going. Isolate the obstacles one by one and solve them. Ask this group every, single question that comes to your mind. Give as much detailed technical information as possible. It is worth it. I was doubting it last week. This week, I can feel it. Keep going. It's hard—and you can do it.

[Sheriff Buford]

I feel real bad for you, but what ever you do DON'T GIVE UP! Aside from comfort, the issues everyone has with masks are leaks. Look at the mask I use. Very few people use my model. One of the reasons is because it constantly leaks for others (also big and bulky). It's just the opposite for me. I couldn't stop the first several masks I was given from leaking. When I found the mask I use now, no leaks! Since then, my DME has tried to get me to use a full face, though I don't understand why... I tell her I'm happy with the one I have and I'm not shopping for masks. She just says, "I'm jist tryin' to hep' you." If you can, go to the DME place and try all their available masks. See which one fits the most comfortable. and ask the DME to hook the mask up to a cpap machine to see if you can manage the leaks. It seems that the DME sending you a mask is time consuming and unsucessful. This can turn into discouragement. Read and inform yourself a lot on this website and take control. I will pray for your sucess today!

Sheriff

[Mary Z]

Hang in there. I feel for you. I can't tell you how many masks I tried before I settled on the Respironics FitLife Total Face Mask. Many of us had good DMEs to help us with mask selection. I found mine on my own after buying lots of masks off cpapauction to try them out. If they didn't work I resold them or chalked it up to experience. The mask is the achilles heel of CPAP. FInding the right mask is probably the hardest thing we do, but it's well worth the effort when you start feeling the benefits of your therapy. I'm glad you wrote before you stuck your machine in the closet. We hear from lots of people who did just that and one year or five years later they are trying again. Fill in your profile so we know what equipment you are using and can give more specific advice. Don't give up. Good luck.

[jazzer4]

Hey, if I can do this, you can do it!!

Finding the right mask is the hard part and especially when you feel like sh***.

I don't know what mask your using, but if I were you I would go to the lab rat page on this forum and find what fixes they have for what your using. (I know your tired and this is hard because you have to think, but you need a few days sleep under your belt now, so try to do it. Do you have someone who can help you?

Next go to Walgreens with some cash and pick up anything you think will help you according to the rat lab information.

Then, start early. Don't wait till 10 mins. before bed to work on this...it's to frustrating.

Use what you can of what you bought to fix that mask. Remember do it early so you'll be prepared to go to bed and sleep.

Once you get some sleep you'll be a bit more "up to the task". Then, you can back here and get additional help.

Good Luck, you can do it!! I did.

[mayondair]

Hello, and welcome! This forum is a treasure trove of help and info, please fill on your profile so that we can help. I'm a side stomach sleeper also, and there are masks that work , so don't feel you have to change sleeping positions. We'll. help you get comfy, make friends with your mask and machine and get you on the way to feeling better and making this work for you Kathy

[Lori Dawn]

Hi, John,

Welcome to the forum! Finding this forum is the BEST THING YOU HAVE DONE SO FAR! I know where you are at right now because I've been there. Leaks from a mask and NO SUPPORT from the people you expect to help you caused me to quit -- twice! I was diagnosed seven years ago, and I wish I had found this site back then, because I am kicking myself now for the years I could have been feeling better and DID NOT! The problem won't go away, and is likely to get worse. The strain on your body from OSA is HUGE! And CPAP therapy is HARD! No one will dispute that AT ALL! Many, many people quit out of frustration, like you want to do, before they find their optimal therapy. They run all kinds of risks with heart disease, stroke, diabetes, etc., etc., and have little to no quality of life. Good sleep is very important to feeling good and getting/staying healthy.

Support from the techs has been close to non-existent. They don't return calls. I talk to a different person every time, and so end up starting from scratch. They sent me a different model mask, which is only slightly better.

There are MANY, MANY people here who CAN and WILL HELP YOU! Don't expect any help from the "techs," or you will be disappointed. There are a lot of reasons for this, which you will learn as you go. The mask issues are the first/biggest problem most people have. Solve that and you will be a HUGE step closer to making CPAP work for you.

I am a stomach sleeper, and have been trying to sleep on my side with the device.

There are people here who are stomach sleepers and they have, through trial and error, made it work for them, and they will pass along their invaluable experience to you.

I feel that I am so far from this being a workable solution, that I can't ever envison this working for me. I am exhaused, frustrated, and don't know where to go from here.

I KNOW HOW YOU FEEL! I came here almost three months ago. I was exhausted, frustrated and depressed. The first step in making CPAP work is to accept that you need it and make a commitment to succeed. I know that success seems far away at this moment, but please hang in there!

The next step is to educate yourself. There is A LOT of information on this site to sift through and digest, but dive right in, as much as you can in your sleep deprived state, and read, read, read. The CPAP Wiki (lightbulb) at the top of the page is a good place to start. Then dive into some of the threads. There is also a search feature at the top of the page where you can search for "stomach sleeping" for instance, or "mask stomach sleeping" and zero in on threads that talk about that and what kind of mask they are using. You will find yourself in a lot of the stories and threads that you will read, and you will begin to be able to "envision" yourself solving the problems that you encounter along the way. That is also a HUGE STEP!

People here have been there, done that, and BOUGHT THE T-SHIRT! Ask for help when you need it and you will get more support, advice and encouragement than you ever imagined!

I KNOW HOW HARD IT IS FOR YOU RIGHT NOW! And there will be times when you want to quit, but PLEASE DON'T! You will regret it someday, and have to start all over anyway, losing MORE time in which you are still "exhausted, frustrated and don't know what to do from here." And you will get to the point that you actually like/love your mask and look forward to sleeping with it! I know that sounds unbelievable right now, but it's TRUE! I'm here to tell you that I didn't believe it at first either, but it is SO TRUE now!

I have mostly solved my problems and am getting optimal therapy for the first time after the friendly and knowledgeable support from so many here on this site. It will be an invaluable resource for you, and you will acquire all the knowledge and support you will ever need to make it work AND to feel better than you have, probably, in a LONG TIME!

GOOD LUCK AND, PLEASE, PLEASE, PLEASE, HANG IN THERE! It will turn out to be the best fight you have ever fought, I PROMISE!

[snardo]

One of the things I realized shortly after starting on therapy is that saying "I'm a (fill in blank here) sleeper" may be something to re-evaluate. The reason I say that is that before therapy, I was a stomach-sleeper. That was because I could not breathe on my back (shocking, I know). With CPAP I have now discovered that I CAN BE a back sleeper and, in fact, that works best now because sleeping on my stomach or anything else makes it harder to keep my mask from leaking. Where before I would never have considered sleeping on my back, now, that's almost exclusively how I sleep (occasionaly roll to my side during the night now).

All that said, I would also echo others in the encouragement to try out other masks. Spend some time at the DME trying them out (laying down if possible as that seems to make a difference in fit). If they won't do that for you, find a new DME. You may also need to adjust your thinking about how to adjust a mask to reduce leaks. In many cases, tightening a mask may actually increase leakage because of how the mask is designed to seal. Addtional info on what type of mask you're using would be helpful in diagnosing that type of problem. Good luck! Keep at it - it really is worth it!

[DoriC]

It can be things as simple as a different bed pillow that will accomodate the mask and a hose management system that will allow you to move around without pulling on the mask. Do a Search here. You're getting some good advice here but read all you can on Wiki and ask questions. Please list your equipment and any additional info that might be helpful on the User Control Panel.

[TalonNYC]

Please, don't give up! Just be gentle with yourself and your machine, and remember this is an endurance race. You don't get your second wind for a little while (after working all the kinks like ill-fitting masks and horrible techs out) but when you do, the rush is AWESOME! The people I've met on this forum over the last couple of months have done everything to assist me with every problem I've run into.

If you experiment, take things nice and slow, and ask for help whenever you need it, things WILL get better.

[Janknitz]

I'm sorry that you have gotten no support from the so-called professionals you are paying a lot of money to (for the purchase/rental of your machine and equipment). Part of the reason DME's charge so much is that they are supposed to help in situations like this.

Something you said here is key:

I have leaks within the first hour of use. So I re-adjust, which just resets the clock and the hour starts all over again.

I'm going to guess that your machine has a "ramp" feature that starts out at a very low pressure. You fit your mask at that very low starting pressure. As your machine pressure increases, the leaks start. You turn off the machine, adjust the mask, and it all begins again.

Without knowing what machine, settings, and mask you have, we can't be much help, but if you tell us those things we can help you stop these issues. We can tell you how to turn off the ramp feature or adjust the pressures so you don't have this increase leading to leaks and/or adjust the mask at a higher pressure so it will hold as the pressure increases. Then, instead of lying in bed waiting for it to start leaking, you can go to SLEEP.

That is if you want some help rather than giving up--I suspect you do because you posted here.

[bs4u00]

I too was a stomach sleeper. I slept on my side somewhat, but primarily I was a stomach sleeper. Tried a few different masks and I couldn't find one that didn't leak. So I switched to nose pillows. I cannot sleep on my stomach, but I can at least sleep on my side without many problems leaking. Occasionally it leaks, but not too often. Once in a while I will go on my back without knowing it, and sleep well like that too. I have to use a chin strap with the pillows, but that's not a big deal at all. The end result is that I don't get perfect sleep, but it is better than before.

My .02 is to try a couple different pillows masks. Good luck!

[rested gal]

And the Lab Rat page is....

....here...

LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

A couple more pages that might help...

If the main air hose is tugging the mask out of place a little when you turn over:

LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

Don't know yet what kind of mask you have, but if you're using a FF mask because of mouth breathing when you sleep, and would like to try nasal pillows but know you'd lose therapy air out your mouth and a chin strap doesn't prevent air from gushing out:

LINKS to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

As for full face masks, the one Mary Z mentioned (Respironics FitLife Total Face Mask) was surprisingly not very leaky and was comfortable for me, even for sleeping on my side. That one, odd as it looks, is certainly worth a try for anyone still struggling with trying to find a FF mask.

If I weren't perfectly comfortable putting tape over my mouth, I'd have to wear a FF mask. So...in order to not have to limit myself to FF masks, I use tape over my mouth. The Headrest mask (a nasal pillows mask) I've been using for over five years is exceptionally good for tummy sleepers. Great for sleeping in any position.

[sister]

Hi, you really don't want to hear all the problems that I have had since I started on the road of c-pap in 2006. Believe me, you don't,and I have just recently won the battle.
I am proud to inform you that I am now sleeping all night (7-8 hours), and I have never felt better.
I want you to know that life is worth it,no matter what you have to go through,it is worth it.So make up your mind that you ,and you alone can do this.
I thought for too long that other people were supposed to help me (dr's, family,dme's,etc.)
When I accepted the fact that I had to help myself,and found the wonderful people on this forum,I began to get better.
Listen to these people,they know what they are talking about,they will help you,and you will look back as I do now,hardly believing that you once felt this way.
GOD BLESS YOU!!!